Oh God, here I go again...

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Oh God, here I go again...

Postby alpinestrawberry » 27 Sep 2011, 06:32

Well, it's back and it's bad.
Almost 6 months to the day after surgery, and I feel now that I've gone back almost to square one...although it isn't as painful as it was prior to surgery, so that's something positive, I guess. I don't have that all day burning I did then.
I can just tell that the muscle has tightened up on me again. It's like the rest of my sphincter is trying to overcompensate for the spot where it's been severed! I was doing pretty much ok, but then I had a bout of loose stools thanks to a virus, something we ate, or my system being irritable (hard to say for sure). Then it was like my body didn't like the transition back to having regular stools.
So for now I'm trying to get readjusted with nitro and fiber supplements. Stupid muscle. I'm sick of it. I don't know how much more I can tolerate before I wind up in the CRS office begging for a sphincter-ECTOMY. That's right. I don't want it anymore. Take it out and put it in a jar on a shelf. I'm such a tightass I'll probably just manage to grow a new one anyway.
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Re: Oh God, here I go again...

Postby val » 27 Sep 2011, 06:39

Oh, poor you! Mine felt like it tightened up again too! Have you got any nitro or diltiazem that you could try again?
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Re: Oh God, here I go again...

Postby alpinestrawberry » 27 Sep 2011, 06:58

Thanks val...yup I've got an old tube of nitro hanging around...the funny thing is it was prescribed to me at 2%, so WAY too strong. Which means that after a year, my tube of extra-strength nitro is still plenty effective.
I really, really like my CRS. He is a wonderful, warm human being. He really listened to me and never made me feel humiliated, like some folks on here have unfortunately experienced. I think he's very experienced but conservative with his cutting...he did admit when I asked that he's had to do the surgery more than once on some patients. However he's NEVER made anyone incontinent. I guess needing a second surgery is better than a permanently useless butt.
All that being said, I'm not over-anxious to see him again. I tend to drag my feet, I know I do. I'm probably just causing myself unnecessary pain and anxiety by waiting.
Val, when you say you feel like you tightened again too, was it something you've had to have another surgery for? You've had more troubles with fistulas than fissures, have you not? Can fistulas be caused by fissures or are they more associated with things like Crohn's? Sorry, that's a lot of questions.
While I was doing better I wasn't around here much...I basically wanted to forget all about the ordeal I'd been through, but I guess I'm not done yet. Maybe I never will be. No matter what happens I hope this site NEVER shuts down. It has been one of the best things in my life, and really seen me through some dark times.
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Re: Oh God, here I go again...

Postby val » 27 Sep 2011, 07:17

When I had the LIS, I didn't want it as I was really terrified of having butt surgery! But then I developed a fistula, so didn't have a choice.
Then, I got another fissure this year which again developed into another fistula, so I had another fistulotomy. It was a high fistula and it was all laid open.
A couple of weeks ago, he gave me salbutamol, which was to relax the muscle - so maybe it is too tight again!
I do think it regains it's strength, and I also think retears are pretty common if you are prone to fissures.
Hopefully yours will heal up quickly this time with no need for another surgery.
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Re: Oh God, here I go again...

Postby alpinestrawberry » 27 Sep 2011, 08:33

Val, thanks so much again. It helps to hear that I'm not alone.
One thing I'm going to try before jumping on the surgery table again is a gluten-free diet. I know that's sort of a trendy thing right now, but I just read another member's (ouchtear) experience. He had the LIS surgery a year ago too and was still suffering until he went off gluten. It wouldn't be surprising if I had an underlying condition like that...I mean why should I go through periods of being ok and then suddenly BAM! trouble again? Maybe it's because of variations in what I eat.
On the other hand, maybe that's not the case and maybe the muscle has just regained some strength over time. But it won't hurt to try going off gluten, at worst it's a PITA trying to maintain that diet and at best it's a total cure. I do have a good friend who's gluten intolerant so I'm sure she's got a wealth of recipe ideas. My husband brews a lot of beer, and it's mighty hard to resist drinking it. However my friend and I have been begging him to brew a gluten-free variety and he's game.
That's not going to help me this weekend, which is our party weekend with friends...maybe I'll have to get a 6 pack of gluten free beer for myself.
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Re: Oh God, here I go again...

Postby Deleted User 579 » 27 Sep 2011, 12:35

Aw, Alpine! I'm so very sorry that you are struggling again! :( That's so unfair, after all you've already been through! There have been people here who had to have two LISs and finally healed, so if that's that way you have to go, then I do believe that there is hope. A gluten-free diet is worth a try. I don't think it could hurt, and it may even help, so why not.
I really hope that the nitro works and that you heal up quick. Image
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Re: Oh God, here I go again...

Postby Em » 27 Sep 2011, 14:57

I'm sorry that you have got the problems back again.
When I was just reading this site and not posting your success story was one that made me happy.
I hope you heal soon.
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Re: Oh God, here I go again...

Postby PaulsPain » 27 Sep 2011, 15:45

Alpine-
Bummer that you are dealing with the fissure again. Hopefully you can get it healed on the nitro.
Ya, trying the gluten free diet is worth a shot. I have debated it myself just to see.... I used to homebrew. I used to love having 1 or 2 finely crafted beers on the weekend. That hobby went away after I started with all these rear end issues. I haven't had anything to drink in almost a year now after starting all these meds.
Wishing you quick healing.
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Re: Oh God, here I go again...

Postby alpinestrawberry » 28 Sep 2011, 06:31

Em,
I'm so sorry my 'success' story hasn't quite had a fairy tale ending...at least not yet. Don't let it discourage ANYONE from having this surgery. I have to emphasize that I was never going to get better without surgery. And I AM better now, just not 100% better.
It's just devastating because I hoped I'd be able to totally forget about my butt by now, but that isn't happening. I like my CRS and all but I hoped he'd be in and out of my life like a summer fling...and now it looks like he'll turn out to be more like an ex-husband (we have joint custody of my ass).
Paul, it does suck when you can't enjoy the things you used to. Crohn's meds are serious business and I doubt I would touch a drink either if I had to take those. It's worth it if you feel better though.
Hope, I know I shouldn't whine about possibly needing a second surgery...after all, you, and others had to have another one, right away! I should just be thankful this hasn't morphed into a fistula. Actually there's a lot to be thankful for. But it's hard when your ass is ruining your day.
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Re: Oh God, here I go again...

Postby Deleted User 579 » 28 Sep 2011, 07:04

Oh Alpine! I didn't mean to suggest that you shouldn't whine! :) I'm crying for you. This is so unfair and I really hope that you heal very soon. I understand about not wanting to tell your hubby just yet. Please definitely feel free to come here to whine, rant, complain, etc. We understand what you're going through! I'm hoping you get awarded full custody of your ass very soon!
Really big hugs to you!
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